Cindi....here we undestand, and as much as is possible, we've got your back. I have found that this is the only place where people unerstand that the melt down sometimes happens in the caregiver, not the O. And you get a double dose....I am so sorry. Nan

Sun Dec 19, 2010 11:15 pm

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Comparing a bipolar son and Lewy dementia

Oh my dear Cindi.... I could have written your post. I know well what you have been through. Our son moved in with us after his 1st wife couldn't take another episode. She wanted children but didn't want them to be fathered by a bipolar. We couldn't blame her.

He married again and leaves a daughter who is now 10 and autistic. He worked for Wal Mart. They took him back regularly after his repeated six week stays in the local mental facility. However, after 3 felonies, they told us they would not have a job for him this fall when he was due to be released. We were shocked when we got the call from the prison chaplain that he had died alone in his cell. He was just 44.

I know the burden you carry. In the end, an episode led to his driving over 100 mph on city streets followed by sheriffs at night through a construction zone. He lost control, he hit a woman knocking her down, and then he got out and beat up both sheriffs.

He was a good kid... a college graduate.... an athlete.... Life is unfair.

Thanks for sharing, Cindi. Please keep me informed. I had no idea my post would invite such a heart-breaking story. I ache for you. I care.

Cindi, I can't image what you're going thru. This is not fair, do you have anyone else to help and support you? We have two daughters that are always asking to help, even my son-in-laws offer to stay with Frank so I can go off with the kids. They wanted to have Frank stay with them for the weekend to give me a break, I think if they did that once, they'd never ask again. I don't need that kind of help "yet".

Take care of yourself and get some help, you can't continue to do this without it taking a toll on your health.

Cindi, how awful about your daughter! Having to deal with both situations! It sounds like your life has been a nightmare for 25 years and with no end in sight. It is true, that all any of us can count on is this minute, this day. If I have to look much further ahead than my faltering feet I sink in the Sea of Despond, like in Pilgrim's Progress. In fact, I've been sinking in that sea this past week. Knowing that you have it doubly hard makes me feel wimpy. But please know that you will be in my thoughts and prayers. Please do get a break of some kind if you possibly can.

Wouldn't it be great if we could all go to Hawaii [without our LOs] right after Christmas?

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Dec 20, 2010 10:25 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Comparing a bipolar son and Lewy dementia

Cindi - I too, cannot imagine how you are able to cope with 2 people with such difficult issues. You must be a very strong person, and I sure hope you get help with each of them. Take care of yourself! Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Mon Dec 20, 2010 3:41 pm

cdw

Joined: Fri Nov 05, 2010 11:30 pmPosts: 318Location: southern cali

Re: Comparing a bipolar son and Lewy dementia

thank you all.. its so nice to be able to occassionally share.. i have friends i can talk to, but i hate to spend my time with them complaining...so i limit what i say, or mimimize!!

its the time with friends, that give me strenght, to keep on going.. its the those fun laughs, silliness and acting as though my life is really normal and everything is ok, that is so darn good for my mental health...

Cindi, You do have your hands full that's for sure. I really don't know much about bi-polar but I remember many yrs ago when my husband started with LBD long before the DX, Bi-polar was one thing that I thought was a possible for his behavior.

I did learn that you can't reason with a demented person no matter how much we try.

_________________Irene Selak

Mon Dec 20, 2010 11:35 pm

sharone

Joined: Mon Nov 22, 2010 1:24 pmPosts: 57

Re: Comparing a bipolar son and Lewy dementia

Cindy,

I certainly know what you are going through! My mother passed after having LBD. Our two year anniversary is in Feb.

My sister has had serious mental illness for many years. She was diagnosed with "Borderline Personality Disorder"(BPD). Like LBD doctors/researchers are still differentialting it from other mental illness. I am not saying here that LBD is a mental illness. Just that BPD is hard to diagnose like LBD! My sister has attempted suicide multiple times which is characteristic of this mental illness. I have done lots of research on both illnesses in an attempt to understand both. I think some with Bipolar may be mis diagnosed. Through my research I realized my mother more than likely had BPD.

I am not trying to put on a pitty party here....but Growing up with a mentaly ill parent is very difficult. People with BPD are basically delusional and irrational, not unlike those with LBD!

I guess you could say I have spent a life time sorting it all out. I am still sorting it out!!! I am also a retired learning handicapped specialist mostly dealing with disorders of language. This training became invaluable as I dealt with my mom's LBD.

Hang in there. I believe there is a reason for everything. At my height of my stress I retired from work! I spent two years contemplating my life. Actually sort of a meditation I think. I was preparing to take my mom into my home where she ultimatly died. It ended up being a blessing. Very hard but a blessing in deed.

There are many behaviorl similarites to this disease to language disorders and mental illness. LBD is a frontal lobe dementia. It is the frontal lobe of the brain that reasons. There is no reasoning in our cases.... Take care of your mental health!!!

In a way it is this disease that brought me back to my mother. God works in mysterious ways.

You have come to a great place for support. I wish I had found this site a long time ago. It is nice to be validated. I thought I was going crazy too and for good reason! Sharon E.

Tue Dec 21, 2010 11:31 am

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Comparing a bipolar son and Lewy dementia

sharone wrote:

I think some with Bipolar may be mis diagnosed.

The real bipolar episodes are unmistakable. A bipolar is not merely someone who just has changes in mood. The episodes are frantic and totally out of control. In the last one Dale's son had while living with us, he took all our pictures down from the walls, piled them in the driveway, and covered them with a blanket. He was saving them from the evil forces in the middle of the night.

In Florida, committing him to a mental facility is called 'Baker acting.' Bryan was Baker acted five times and allowed himself to be committed at least once every year. His life was a total nightmare. The meds seem to work for a while... but then, a change in meds is required because of an episode.

I worked on the acute psych floor in a major urban hospital for a while when I was in nursing school and I would say that about half of our admissions were bipolars who had, for various reasons [their excuses were often fantastic] quit taking their meds. Off-the-wall pretty well describes their behavior--no sleep, constantly in motion, often angry, paranoid. It would often take up to two weeks to get them back on track and out the door.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Dec 21, 2010 12:01 pm

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Comparing a bipolar son and Lewy dementia

Exactly, Pat. Well done.... You've obviously 'been there, done that' !!!!! When Dale's son was arrested that last time, his bag of meds from the drug store was in the car and it had not been opened. They think they don't need the meds because they are feeling so good....

I should add that the reason I originally posted this topic was because I am now going through something similar with Dale.

He has been convinced all morning that he is participating in a golf tournament. It's as if he is in a trance. The housekeeper is cleaning and he is hanging around me whispering about what is happening at the tournament. It's surreal.

Leone,I did not mean to suggest your LO were not bipolar. I meant my post to indicate that mental health issues are difficult and that like LBD can be misdiagnosed. I am sorry for you and all those of us affected by all of these brain disorders. I know how difficult it is to cope with these issues. Sharon E.

Tue Dec 21, 2010 1:27 pm

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Comparing a bipolar son and Lewy dementia

I was agreeing with you, Sharon! It's too bad you couldn't see my head nodding.

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